Group rallies in front of CDC over definition of Lyme Disease

ATLANTA — The Centers for Disease Control and Prevention experts say a new report shows diseases transmitted through ticks, mosquitoes and fleas have more than tripled. Deer tick bites cause Lyme disease.

Channel 2's Wendy Halloran attended a protest outside of CDC headquarters where nearly on hundred people, many with the disease were vocal about the CDC's handling of this public health threat.

The protesters call themselves the 'Lyme Army' and say they feel they’re not being taken seriously by the CDC.

“This organization is designed to protect the public, not to hinder and harm us and they’re harming us,” said Mirenda Campirano, who attended the rally from Brownsville, Texas.

She and others protested the CDC’s definition of chronic Lyme disease. They say the CDC's definition of the disease is too hard to meet the requirements to get care.

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“Doctors won’t see us, there is no treatment, no cure, no research when you’re too sick to work you lose your home, you get no disability, they’re not helping us at all,” Campirano said.

“If you don’t have the diagnosis in the paperwork then they don’t believe you," said Kristina Bauer, who also hails from the Lone Star State.

Both women said they passed Lyme disease onto their children when they were pregnant.

“I want my son to know that I fought for him and I did the right thing so if something happens to me, my son will know I died fighting for him because at this point we’re dying from this disease, it’s killing us,“ Campirano said.

Bauer says she’s had success using naturopathic medicine.

“It’s very expensive, everything is out of pocket we’ve spent hundreds of thousands of dollars on treating four children and myself,” Bauer said.

Also at issue, the use of the term 'chronic Lyme disease.'

“It’s a real denial of science,” Bauer said.

The CDC said it’s been used to describe illnesses in patients with Lyme disease but often those patients have no evidence of a current or past infection.

Because of the confusion, the CDC says experts do not support its use.

“When you go in to see your primary care physician they’ll say we don’t believe in "Chronic Lyme" it doesn’t exist and they don’t believe the patients that they’re sick," said Enid Haller from Massachusetts.

Haller calls herself a 'whistleblower."

“The blood test doesn’t work for Lyme so they say you don’t have Lyme and you must go see a psychologist now because it’s in your head,” she said.

On the CDC’s website it says: “You may have heard that the blood test for Lyme disease is correctly positive only 65% of the time or less. This is misleading information. As with serologic tests for other infectious diseases, the accuracy of the test depends upon the stage of the disease.”.

When Halloran asked the CDC to respond to the criticisms. They sent the following statement:

Lyme disease is a serious illness that affects hundreds of thousands of people each year in the United States and tragically some experience long lasting debilitating consequences from their infection.  As the nation's health protection agency, CDC saves lives and protects people from health threats including Lyme disease by basing all public health decisions on the highest quality scientific data that is derived openly and objectively. The agency continues to raise awareness about the growing threat of Lyme and other tickborne diseases and just released this report on the problem.

Cox Media Group